A modern-day hero

Our internet and social-media driven society yearns for heroes, no less than the Greek or Romans did before us. A hero today is nothing less than the demi-god of those days, although the parentage of our modern day heroes cannot be traced back to the gods themselves. We value our heroes for their courage and bravery in the face of threats and adversity.

The Olympic games is the stage where many of our champions fight for a medal, for many the highest achievement possible. In a popular viral video from a Dutch talent show a 9-year old girl astounds everyone with a beautiful rendition of Puccini’s O mio bambino caro. When she is asked by the professional jury what she wants to be if singing didn’t work out, she answered casually: I guess I’ll go to the Olympic games.

During the Winter games in Sochi, we were rooting for our Dutch speed skaters, who managed to win medal after medal until we were wondering: what happened to the competition? Each day the nation was mesmerized by what our speedskaters had accomplished.

This year I intended to follow the Paralympics. Primarily to follow Bibian Mentel, a Dutch snowboarder who has been a source of inspiration to me. However, before I knew it, the Paralympics were finished.

During these Paralympic games, Bibian Mentel won the Paralympic gold medal on the snowboard cross. She has won all the world cup events this season for the snowboard cross so it wasn’t a complete surprise. But perhaps her greatest achievement in the Paralympics was getting the snowboard crosss on the program this year.

I’ve been following Bibian Mentel (online) for a few months now. She is a most remarkable woman. She was working on qualifying for the 2002 Salt Lake City Olympics when she was diagnosed with bone cancer. Four months before the Olympics, her leg was amputated, but 7 months later she became national snow boarding champion in The Netherlands, on one leg (beating the ‘regular’ competition). Before that, she was champion for 6 years in a row.


Since then, Bibian has dedicated herself to working with children with handicaps teaching them how to snowboard and coaching them in the various competitions. Her Mentelity Foundation has a clear vision: to encourage children and adults with physical impairments to focus on what they can achieve. On and off the slopes.

Together with the Dutch NOC-NSF organization, Bibian Mentel has fought relentlessly to add snowboarding to the Paralympic Winter Games. This year was the first year the para-snowboard events were included in the program. Besides competing in the event and winning a gold medal, she is also the coach for the ski- and snowboard-team.

This week Bibian will be honored in Sochi with the Wang Youn Dai Award, also known as an IPC award, along with Australian alpine skier Toby Kane. This award recognizes two Paralympic sporters for their contribution to society. As the short film The History of the Paralympic Movement shows: “…power athletes create a more inclusive society and inspire the world to believe that anything is possible.”

What few know about Bibian Mentel is that she is also a five-time cancer survivor. Her cancer has returned and has metastasized, and she is living with it every day. She is a true survivor and a role model for anyone who values persistence. For her, the illness that resulted in her amputation will most likely also cause her death. But she is always smiling, facing her enemy with courage and determination.

As Benjamin Franklin said “Energy and persistence conquer all things.” And so my hero Bibian Mentel shows us that the weapons of the modern day hero-warrior are tools of the mind as well as the body: persistence, energy en optimism. For all of us, these true heroes really do make us believe that anything is possible.

If you’d like to read more about Bibian Mentel, please check her website at http://www.bibianmentel.com/ or the Mentelity Foundation.  Bibian Mentel’s book – Met mijn goede been uit bed – is available via the Mentelity Foundation (in Dutch only) by sending a mail to info@mentelity.


Drug company: Ailing 7-year-old Josh Hardy will get medicine – CNN.com

Update from CNN: Josh Hardy will get the medicine he needs after all!

Kudos to @chimerix and Ken Moch for helping this boy and his family! I think it is an admirable decision by this CEO to help this child, even though he had previously stated their position. It is also a reminder that no matter what, it sometimes is necessary to change one’s point of view.

A drug company denies a drug to a dying child

Just scanning Twitter I came across this story of 7 year old Josh who is a 4-time cancer patient now dying of a virus for which there is a cure. Here is a beautiful video about Josh and an interview with his mom on CNN:

Josh Hardy’s mom on CNN 

[I’m having trouble embedding the CNN video, so included the link.]

The drug brincidofovir is being developed by @chimerix and is in de last phases prior to marketing authorization, which is expected by 2016. This company is denying this drug to Josh because if it helps one patient, it must help others as well. I suspect that the compassionate use of this drug in this phase could result in the risk that the drug is not accepted by the FDA and other authorities. This is because all ‘adverse events’ – from minor side effects to deaths of patients – have to be reported. When patients are close to dying and get this drug, if they die, it may prevent the drug from being approved even if the deaths are not caused by the drug. But there is a way out of this catch 22. 

There is a movement that could make a difference for patients with incurable cancer and for the drug companies that would help them if they could: it is called myTomorrows. This social enterprise aims to make drugs available to patients who need them when these drugs may not (yet) be approved for use. What if myTomorrows were able to provide brincidofovir on behalf of Chimerix? I’m just speculating now, and of course money is needed to be augment the limited supply that Chimerix has currently.  I believe this could be a win-win situation.

Read here what myTomorrows is all about. We are here to help!

Kom naar het kinderconcert on March 9th (Come to the children’s concert)

Zonta organiseert op zondag 9 maart een prachtig kinderconcert in Singer Laren. Dit wordt echt een hele leuke dag!  Het concert is voor kinderen vanaf 4 jaar en duurt iets langer dan een uur. Het Artonis Piano Trio speelt prachtige ontroerende muziek en het Circus Amersfoort – dat vooral bestaat uit jongeren tussen de 16 en 18 jaar – zal ons vermaken met hun acrobatische toeren. Het concert is voor jong en oud en kan goed gecombineerd worden met een bezoek aan het Singer museum, waar nu de tentoonstelling van Mauve tot Mondriaan loopt.

kindercircus amersfoort
kindercircus amersfoort

140102 circusconcert def

Alle vrienden die een kaartje kopen zijn van 12-14 welkom bij mij thuis voor een lunch/high tea. Ik zorg voor lekkere hapjes en drankjes. Als je kinderen onder de 4 hebt, laat het even weten en dan zorg ik voor oppas. We hebben een speeltuin naast ons huis en er is een hele mooie speeltuin in Laren (Ons genoegen) waar we ook naar toe kunnen.

Tickets kan je bestellen via mij per mail sheila.ghosh at me.com. (Dit om spam te voorkomen!).

Ons goede doel dit jaar is Femmes for Freedom die vrouwen helpt die gevangen zittten in een huwelijk. Je zou het in Nederland of Europa niet verwachten maar veel vrouwen die religieus getrouwd zijn kunnen niet scheiden zonder een geldsom aan de man te geven, zelfs als hij hen verlaat. En vaak wil de man dan nog niet scheiden. Mannen mogen meerdere vrouwen trouwen volgens deze godsdienst dus die hebben er geen last van. Deze dappere vrouw wil deze ongelijkheid en onrechtvaardigheid ter discussie stellen en heeft daarvoor de hulp van anderen nodig om de cultuur en wetten te veranderen. Dit goede doel wordt dit jaar door alle Zonta clubs van Nederland gesteund. 

Ik hoop dat jullie massaal gehoor geven aan mijn oproep want het wordt een hele leuke dag! En ik vind het erg leuk om jullie dan weer te zien. Willen jullie dit doorsturen aan vrienden en collega’s, verenigingen of scholen?

Hopelijk tot ziens op 9 maart!!

For my international friends:

On Sunday March 9th, my Zonta club will be giving a Children’s concert at our local museum Singer Laren. The concert will be held in the Theatre which seats 400 people, so we have lots of tickets to sell. But since most of you live very far away, I can’t imagine that you could come here just for that!

The charity we are supporting is Femmes for Freedom. The founder is a Dutch woman of Pakistani descent who experienced imprisonment within her marriage. She was not allowed to have friends or even see her parents. When her husband left her, she could not get a (religious) divorce. Many women have find themselves in this predicament. The culture and religious laws will need to change, but the things she has been able to accomplish already are very impressive. So spread the word, and if you know of anyone in this situation, you can point them to the Femmes for Freedom website.

Take care,